Progress with Zach has been slow with one exception: he can say cookie darn well. Yup. Where there is a will there is a way. We need to start ABA therapy on this kid! I really feel that I cannot push him to do it on my own - I need help. His current services are not producing the results that I know (and the folks at Yale confirmed) he is capable of. This is nothing short of a sin that he has not started these services yet and that I have to jump through my bum to get things rolling.
I was reading this morning about various biochem treatments for autism. Biochem = mostly medications but some supplements too. It finally struck me. Many of the books I have been reading have made a lot of sense to me as an engineer, stating not to waste time with holistic or alternative therapies that are not scientifically proven. They may not hurt your child, but they will waste your time, and time is of the essence. This made total sense to me at the time, but I felt some caution, that these were people who thought too much along the same lines as me, and that perhaps, there were other logical views I should consider.
Caveat to the following: I am no doctor of medicine by any means! I don't even play one on TV. There are various diseases and disorders that are catchalls for groupings of symptoms more than a specific type of causation. Leukemia and epilepsy come to mind. Autism is also like this. The thing about autism, is that it seems that unlike some of these other afflictions, it manifests itself uniquely to every individual, thus, I like to call it the snowflake disease since no two persons with an ASD seem to be alike. Indeed, I have read cases that even identical twins who both have ASD may have different symptoms.
So, knowing a little about the scientific process, how does one go about doing a study whether it be a single or double blind study, if the subjects can vary so much, more so than just about any other disorder/disease out there? You need a group to test on that are alike - and autism just doesn't have a lot of groupings that seem to work this way. This is the reason that autism took so long to be defined in the first place. In fact, did many of you know that the medical community readily accepted that autism was caused by "refrigerator mothers" who unwittingly showed a lack of love to their child? This was widely accepted well into the 1970's until it was disputed by a Dr. Rimland. However, the damage had been done, parents were blamed for their children's condition, and many people still argued for this insane theory well after the fact.
My point is, with such a complex set of symptoms that manifest themselves in so many ways, how does one go about studying what is effective to all children of autism? How do you control this study when it requires statistically identical groups? Early Intervention has noted that an individualized plan is required for each child because they are so unique and have different needs. Indeed, the medical community is going to need to recognize the same. Some things may work for some and not for others. Thus a lot of anecdotal evidence vs. the sound scientific reasoning are pitted against one another.
We just don't have the studies and the statistics for all these treatments, that does not mean they are not affective. It just means the science/research/medical communities need to get off their duffs and start doing what it takes. There is too much anecdotal information for these things to be ignored. Someone has to devise a way of studying these things that will give the appropriate level of proof needed to say if and when these treatments are affective. Autism affects 1 in 150 children, and 1 in 94 boys. Where is the funding for this research when it affects so many?? (I'll give you a guess - how about AIDS, substance abuse, tobacco - all things that there are known preventatives for. Don't believe me - check out the National Instute of Health's website about where your tax dollars are going http://www.nih.gov/news/fundingresearchareas.htm)
Parents do need to try things on their children, and tell the doctors that their academic background, credentials, and experience are too limited to effectively deal with this disorder.
I have always been a misfit - I was tall, blond, geeky, an engineer. I am used to being the one who doesn't fit the average case. Just try and go shopping for pants with me! I was told not to pursue electrical engineering due to my sex. Steve has his master's degree at the age of 21 and like me is a geeky engineer. Just because something is an outlier statistically, doesn't mean it doesn't have relevance. In fact, sometimes is shows that there is an error in the theory.
Zach will not be on the average curve - but neither were Steve and I. Who wants to be average anyway?
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